Sjogrens

[Miamigirl305]

My blood tests were negative for sjogrens. My doctor said the lip biosy was unnecessary but I pushed him to order it. I'm glad I did because the lip biospy was positive for Sjogrens. My rheumatologist confirmed the diagnosis and now put me on plaquenil.

[KellyInTexas Administrator]

Very pleased! I hope it helps you all the way around.

So do you also have APS?

[Miamigirl305 in reply to KellyInTexas]

Maybe, this is the first time I hear about APS. Thanks for asking, I'm going to look into it further

[KellyInTexas Administrator in reply to Miamigirl305]

This is a forum for APS ( Anti Phospholipid Syndrome, which is also called Hughes Syndrome.).

Professor Hughes, along with his colleagues, were the first collaborative group of researchers to describe the syndrome ( in 1983) in a way that brought this newly described syndrome to a place where the patient and proper treatment could come together for life saving results.

Often Sjögren’s is seen in tandem with APS.

ghic.world/

[HollyHeski Administrator]

Im glad you pushed too, as now you have a diagnoses. And yes plaqenil helps the symptoms, some have difficulty taking but really worked for me.

Do you have diagnoses of Hughes/APS aswell?

[Miamigirl305 in reply to HollyHeski]

I didn't know anything about APS. I just looked it up and it's pretty on point with my symptoms. I'm going to ask my rheumatologist to test me for it.

[Lure2]

Well done!

Do you also have Antiphospholipidsyndrome? Try to get to a Specialist who is knowledable of autoimmun illnesses and who works with those patients daily.

[MaryF Administrator]

Good news, and great you followed that on through! MaryF

[leakeadea]

Hi Miamigirl,

I'm really grateful that you posted this on Sticky Blood, I'm so glad to hear you pushed for the lip biopsy and really wishing I'd done the same.

I have APS and also believe I have sjogrens. Unfortunately when I saw a rheumatologist about sjogrens, I was told I didn't have it based solely on the blood test results alone, he didn't even do the tear test let alone the lip biopsy!

I'm seeing a new Heamatologist at a different hospital in 3 weeks time and thanks to your post I'm going to ask to be referred to a rheumatologist at this same hospital and will insist on having the tear test and lip biopsy this time.

I have to use special eye drops constantly and mouth wash, plus tablets you stick to the gums at night. I also have a lot of the other symptoms that come with sjogrens but the rheumatologist I saw said I don't have it, so helpful. 🙄

Thanks again for posting 👍

Claire

[Yellow-Petal in reply to leakeadea]

It must be such a relief for you to finally feel believed especially when blood were negative. I to have negative bloods but pushed for the lip biopsy as I was told it was Fybomyalgia I had. I've come in from work today to find a letter I'm cc'd in its addresses to my Doctor from my Rheumy simply says this ladys minor salivary biopsy result showed features consistent with Sjogren's Syndrome. I will be discussing the findings with her when we see her in our clinic. Do you think this could be a diagnoses for sjogren's. Hope you are feeling better now you are being helped with yours. It's great to hear your story.

[Yellow-Petal]

It must be such a relief for you to finally feel believed especially when blood were negative. I to have negative bloods but pushed for the lip biopsy as I was told it was Fybomyalgia I had. I've come in from work today to find a letter I'm cc'd in its addresses to my Doctor from my Rheumy simply says this ladys minor salivary biopsy result showed features consistent with Sjogren's Syndrome. I will be discussing the findings with her when we see her in our clinic. Do you think this could be a diagnoses for sjogren's. Hope you are feeling better now you are being helped with yours. It's great to hear your story.

[leakeadea in reply to Yellow-Petal]

It definitely sounds like you're being diagnosed with sjogrens, which is great news.👍

Unfortunately I haven't been seen by a rheumatologist yet but I have been referred to one by my new haematologist at UCLH. I was really impressed by how I was treated at UCLH, which was the polar opposite experience compared to how I was treated at the previous hospital I was under. I am being referred to several specialists including rheumatology, neurology and a specialist at Brompton Hospital too.

They also did the most thorough blood tests I've ever had, which flagged up the Lupus anticoagulant and two of the APS antibodies, one of which is considered to be high. Can you believe I was told my APS bloods were negative at the previous hospital I was under, despite the fact that I had one raised antibody and was Lupus anticoalant positive in all my blood tests between 2017-2019 at that hospital?!! It's shocking really!!

So pleased to hear things are looking up for you 👍 😁.

Claire 😊